I have not yet been diagnosed with Lupus, I'm waiting on blood test results from my rheumatologist but reading up on the symptoms and other people's experiences... it's like reading my own biography. I'm not even 25 yet and I feel like my body is falling apart!! I feel like everyone I talk to doesn't understand, especially other people my age.

Any advice or words of wisdom?

tgal

12-01-2012, 06:04 AM

Welcome to WHL. I am sorry that you are dealing with so much right now. My only advice at this point is to try not to focus too much on Lupus itself while you wait for your results. Lupus symptoms mimic so many other diseases that until you know for sure, don't panic.

My second piece of advice is this... Remember that there is no single test for lupus and sometimes, even when you have it, it can take a long time to diagnose. You know your body. You know when things are not right. No matter what the doctor says you keep pushing until you find out what is going on with you. Whether it's Lupus, another AI disease or something completely different don't let the doctors push you aside and say there is nothing wrong if you know better.

keep a list of your symptoms. Keep a list with all test that come back abnormal as well. I also had a short history of what happened to me and I always gave these 3 pieces of paper directly to the doctor when he came in the room (never to the nurse to shove in a file). It forces the doctor to actually LOOK at the. And see you as a person not just a patient.

Hope this helps and know that we will be here for you as you try to unravel this mystery

Nmark013

12-01-2012, 06:50 AM

I have been trying to unravel this mystery for a year now, the first rheumatologist I went to just wanted to put me on pain killers and avoided making a diagnosis which was frustrating as heck because he not only wasted my money but he wasted my time. Now I've been to a new specialist and they are running my blood... Again. Back to square one! If I have to do the ring-em-around one more time I'm going to scream!!

I honestly think it's a textbook case of lupus I have felt this way for as long as I can remember I have the butterfly the capillaries under my fingernails are dilated my hands and feet turn whitish blue when I'm cold (which is frequently) I'm thirsty ALL the time ALL year round, and my body feels like someone threw me down the stairs when I wake up every damn morning haha... If that's not lupus I

There were several things my rheumatologist brought to my attention that I didn't even know we're signs of a disease I just accepted them as every day things everyone e goes through but the older I get the worse I feel. She also mentioned that lupus is related to crohns (spelling?) which my brother has.

::sigh:: I just want to enjoy my youth before it's all gone :(

Thank you for the advice about writing things down, What an excellent idea! Thank you for listening it really means a lot